Then and Now

Know how people recreate childhood pictures as adults? We did a version of that this Christmas, reliving the memories of a Christmas past.

Look at those adorable little kids.

Oddly enough, my dad was more willing to recreate this picture than to wear my Santa shawl as festive outer wear on our bowling outing Christmas day.

We had a bit less real estate to sit this year, for some reason.

Needless to say ... I don't see us being able to do this again. 😄

Adaptive Skiing - An Incredible Success

Last fall, after talking with another special needs' mom about her son's experience with adaptive skiing, I asked Dave what he thought about me signing Teddy up for adaptive skiing. He responded with 2 things:

1. I want nothing to do with it. (This is less about Dave not skiing than about not wanting anything to do with a risky sport that could result in broken bones.)
2. There's someone at my work who does this. Do you want me to get more information from her?

That's about as much of a green light for this project as I'd get, so I ran with it. Kelsey volunteers with SouthEastern Wisconsin Adaptive Ski Progam (SEWASP). She was incredibly helpful, and I worked through the process to sign Teddy up for adaptive skiing. I requested what's called a bi-ski, where Teddy would sit and be skied down the hill by volunteers. This is most similar to his waterskiing experience, and it seemed like the safest, easiest option considering Teddy's intellectual disabilities and the fact that his listening ears are often broken.

However, SEWASP wanted to assess Teddy for stand-up skiing based on his physical capabilities and had an opportunity to partner with a new ski hill that happens to be the closest to our home. That ski hill, Nordic Mountain, is working to fully build out their adaptive skiing lessons into a full program. So Teddy's assessment and lesson would benefit Teddy and serve as a training opportunity for the team at Nordic. 

I'm not going to lie. I was nervous. I don't want Teddy to get injured because that requires a tremendous amount more effort to care for him. I also was concerned about Teddy following directions and being able to do what was expected. And then there's the wildcard with Teddy that some things simply freak the heck out of him, and he shuts down. I thought between skis, magic carpet rides and/or lifts that there was a high risk of him shutting down or getting freaked out.

We did our best to prepare for the day thanks to YouTube. Teddy does really well watching simple videos on YouTube to help prepare for new experiences or things that are harder for him (like the dentist). My dad came over for morale and physical support for the Ted-venture, and we headed to the ski hill this morning, bright and early (with Teddy unnecessarily up for the day at 4:30 a.m.) and chilly (temps at 0 when we started). 

And, my fears were promptly reality as Teddy immediately wanted back in the vehicle and refused to even walk to the buildings to get started. I headed up to tell the team that we were working on convincing him, but he was anxious. They came over, friendly faces and encouraging welcomes. Their approach helped me convince Teddy to go check out the warming yurt at least. We spent the first 30 minutes or so with them assessing Teddy's walking, getting to know him and working our way into ski gear. The level of skill in their assessment, what they see and how it translates to how they'll help him learn to ski is nothing short of amazing. Dave and Terri with SEWASP are experts at what they do (with Kelsey being a great support). The team from Nordic (Kyle and Eric) were eager to learn and also not without experience in working with adaptive skiing. It's exciting to hear about the program they're developing and what is to come in the next year.

As we worked through each step, I made sure to capture pictures because getting ski boots on was a milestone in itself. (Seriously, have you ever tried to walk in ski boots?!?!) We headed outside to practice sliding and introduce the skis themselves. By the time we got to ski boots, Teddy was all ready to go and excited for the process. 

The team started him with a pole for balance, which they quickly transitioned away from to less invasive methods of support. They are intentional about making it a good, safe experience but in encouraging as much independence to build good habits as possible. The amount of analysis, awareness of Teddy's abilities and fatigue levels and potential options to support him with both equipment and technique were amazing to hear and see. 

If you've ever skied, you likely know about pizza and french fries, the American way to teach people how to ski with straight skis and to wedge to slow down. They decided Teddy is not a candidate for pizza because he'll always try to pizza and end up with crossed skis, so the alternative is to focus on learning gradual turns to slow down. They helped model that, physically turning his skis for him to kinesthetically feel the turn and had him working on assisted turning his last couple runs. 

My expectations for today were pretty low and realistic. I didn't know if he'd even make it on the ski hill and had fully expected him to have hands on support and/or be strapped into a harness to support him. They see so much capability in Teddy, not his disability, and helped him successfully ski down the (very tiny) beginner hill partially with no hands-on assistance. The range of techniques they used, the way the instructor Eric "fell" right alongside Teddy and cheered him for doing such a great job falling to make it fun and easy to get back up again (as easy as it is on skis) and the enthusiasm and positivity from the entire team made this morning downright magical. 

It was also clear from the smile on Teddy's face, the way he immediately started heading back to the magic carpet and his frequent asks to go on the chair lift (wish not granted this time) that Teddy loved the experience!

I never would have guessed before I saw it with my own eyes today that Teddy is capable of this. His listening ears were on point, his focus and his effort were all nothing short of amazing. We could see the signs of fatigue, so we called it a day after a little more than 2 hours. As we were getting ready to leave, Teddy was ready to put his ski boots back on and go out on the hill again! Though his body was tired, he still wanted to go. 

I'm so excited to take Teddy back to the ski hill for him to have more lessons and continue this! 

So happy as he finished his first run!

For the life of me, I wish I could share the videos, but I can't get videos to upload lately to my blog. 

Naughty Versus Nice

I swear I was good this year, but apparently I made the naughty list. And somehow, miracle of miracles, Teddy made the nice list?!?!

That must be the case because what else could explain Santa bringing this to our house for Teddy?

Not-so-little drummer boy.

Yep, that's right. Santa brought Teddy a full drum set. 

Santa, aka Dave, saw how darn happy and content Teddy was at Thanksgiving playing the drums at my aunt's house for several hours. We've never really spoiled Teddy for Christmas, and, honestly, he's gotten very small gifts several years because there's been nothing we could think of that he would enjoy much. But Santa made up for that this year. 

Pure joy in the form of non-stop drumming. Don't worry, he took turns and made everyone play the drums. While they've lost a bit of their luster (literally and figuratively) in the past week, they are very much loved by Teddy. We know that every new visitor to our house will be shown the drum set, given a performance and then a lesson in proper drumming according to teacher Teddy. 

Last year felt very much like getting through Christmas was the goal. This year, I think we all felt a bit of joy. 

Holiday Happiness

This year has brought so much more joy than last year, which was, quite simply, hard. It's been so good to enjoy the holiday season with less sadness and tears, to read our story a day until Christmas, celebrate St. Nick's, head to multiple holiday concerts, and decorate with our big kids. 

Yes, AJ is taller than me.

St. Nick brought us ugly Christmas sweaters. The great thing about the boys getting older and bigger is that now I can steal their clothes, so I have even more holiday sweaters to wear! (The downside is I can never find my clothes because they get sorted into their drawers!) St. Nick even brought all our big kids holiday sweaters, which will make for hopefully some fun holiday pictures.

We also continued our 3rd year of Christmas baking and decorating with the big kids. It makes the double batch of peanut butter balls go much faster with more hands, plus Teddy is all in to hang with everyone else. We always have lots of laughter and end up with goodies made for us to enjoy (as much of my baking in December is for the bakery until I get through my last farmer's market). 

Teddy worked on that peanut butter ball for 45 minutes.

It's not the presents or the gifts that matter, but it's the presence. The time spent together with family and friends who become family. The laughter, shared stories and ability to lift each other up. We're so grateful that Teddy's care needs have helped us build this incredible tribe. 

Our cookie and candy crew is all smiles (and aprons)!

Santa & Smiles

Teddy loves trains. Teddy loves Santa. Teddy loves the Santa train we have done the last 3 years. We snag extra brochures, so he can talk about it all year long (because his way of talking usually destroys a brochure after a few days of incessantly showing it to everyone). 

This day trip is always a highlight of our holiday season. It's perfect for our family because it's a bit low-key, not usually jam packed and ends up being a bit more sensory friendly for us. The hour-long train ride includes carolers, official ticket punching and a visit from Santa and Mrs. Claus, along with a treat from their elf helpers. 

Teddy loves the jingle bells of the carolers. And the fact that most of them are teenage girls.

Teddy is drawn to Santa, and he invited Santa to sit next to him. He was also trying his darndest to convince the elf to squeeze into the foot of space between him and Santa, but AJ took one for the team and squished in there. I felt this Santa was extra attentive to Teddy this year, giving him (and AJ) plenty of time before moving down the train.

Teddy was still trying to convince the elf to join him.

AJ had prepared Teddy's talker for him, so Teddy had several buttons he could use to engage with Santa. He told Santa what he wanted for Christmas (twice to make sure he heard him) and told Santa his name, along with sharing that he loves trains. This was the first time Teddy used his talker to talk directly to Santa and, candidly, his first time using his talker in public. 

It had snowed quite a bit the night before, which made the train ride beautiful. It's one of the traditions we have that aligns with many other family traditions. The only difference is our children our older, but Teddy will enjoy the magic of Santa for years and years to come. 

Halloween Hijinks

OK, it's almost a month after Halloween, so I'm playing catch up. But Teddy had 2 monumental things happen for Halloween that I want to share. 

I'll preface this with Halloween is a favorite for Teddy because he loves visiting all the people. In the past, he's viewed this as an acceptable form of breaking and entering, an invitation to explore every open garage door and a chance to go to everyone's house. A few years ago he realized he was holding a bucket of candy, and he loved it even more!

Through the years, there have been a few costumes that have freaked him out, especially AJ's ninja/shadow suit. But in the last 3 years, that handful of costumes has increased, in addition to some decorations freaking him out. It seems like costumes wig him out (no pun intended) because his brain can't reconcile who he knows with what he sees. It's fine if a costume is very similar to regular clothing, but any wigs or blow-up costumes instantly put him on edge. 

This costume challenge was apparent at our neighborhood Halloween party, when Teddy was so freaked out he could barely make it inside the garage and couldn't wait to leave. So Dave hung out with him at home because he couldn't handle it (Teddy, not Dave). That made me a bit nervous for the big plans Teddy had for Halloween, but he did really well with both.

The first was the school Halloween dance. There are several school dances each year, and AJ has attended all of them to work at them for student council. Teddy had attended none, even though he loves people, music, dancing and food ... all the thing the dance includes. So we had asked what it would take for Teddy to participate in the dance this year, as he'd need support and supervision. His team worked it out, so he was able to attend the dance and did great! He only needed a short sensory break to reset, and he was back in the chaos and loving it! We're excited for other dances, especially as they should be easier without any costumes involved.

Trick-or-treating with his bestie! 

The other was Teddy went trick-or-treating with his best friend. While he's been trick-or-treating with AJ's friend group, who certainly included him, and with our family friends, this was his first time with a friend of his own. The two of them had a great time, despite Teddy being freaked out a bit by his friend's costume. His friend was great about encouraging Teddy and asking for candy for him at the few houses that were way too scary for Ted to venture to the door. It was really a neat experience, and it continues my love of Halloween for Teddy!

Terrific Tooth Visit

Aka trip to the dentist. 

The dentist is one of Teddy's fears. There's a handful of things that absolutely terrify Teddy, most of which defy any logical explanation to our minds (arcades, high lifts, and electric wheelchairs to name a few). Then there's a few things that make absolute sense (the ER and dentist's office). 

I stopped taking Teddy to the dentist when he grew so large  that I could no longer physically restrain him and body hug him with my arms and legs to hold him in place for the quick exams. Any x-rays or dental work has to be under sedation, as we learned when he chipped his 2 front teeth the other year. Not the easy in office sedation because he simply rips off that laughing gas before it even starts. The full in-the-hospital, give him a shot of ketamine to even get him back to the room to get general anesthesia kind of sedation.

So, needless to say, trips to the dentist are a bit stressful. We switched to an office that specializes in kids with sensory issues and other challenges a couple years ago when we needed the sedation dentistry, and he's been making progress slowly but surely. 

His last dental visit was his best yet! He actually sat in the chair on his own (rather than being lifted into the chair), stayed in the room the entire time and did phenomenal for him. While Dave could tell he was agitated the entire time, this was such tremendous progress for him. 

Apparently it's a big problem if any more teeth fall out now.

It was also really neat for me to hear the report from Dave on the dentist visit. While you might not think of a good dentist visit as a point of pride, the excitement and pride in Dave's voice was palpable. It's pretty darn heartwarming to see that form of love for a child.

Next up - trying to make some progress with the eye doctor. While the examination chair itself looks intimidating with all the equipment, that's never once been used on Teddy. Nor has he had any of the puffs of air, dilation or anything that touches his eye. So I'd classify this as one of those inexplicable fears. But our eye doctor's office is great with Teddy, especially his actual doctor. 

So when I called to ask to move AJ's contact lens appointment to allow Teddy's therapist to accompany us and video him to create his own social story to practice, they were super understanding. We're all set to see how it goes with his therapist along, which will give her the opportunity to witness it in action. They're also going to set him up with a mini appointment with a technician to allow us to video him going back into the room and go through those initial steps for the social story. I'm super impressed with them, though not surprised based on our past experiences there (and the fact they've watched me physically restrain Teddy to keep him from running out of the building because he couldn't handle it anymore).